I am curious...... how many people who were originally diagnosed at Stage 1/no nodes ended up with mets? How long from original (Stage 1) diagnosis to first appearance of mets? How far advanced is your disease now? Does anyone know where to get stats on this?
Merridith
Merridith,
Thanks for bringing up this question. I'm a no nodes Stage 1 and I'm curious how many had that same diagnosis and yet had a Met. My doctor thinks I'm crazy to worry about a Met because there was nothing in my nodes. But frankly, I find it easy to worry about it! Right now I'm having chemo and herceptin off protocol.
I was diagnosed April 2003 with Stage IIA, 19 negative nodes...At this time there's no change...maybe some of the others can be more helpful. I will say, though, that so much depends upon the grade (say, 3/3) and other factors.
My friend had IBC with no nodes involvement. In one year she had mets to her lungs. She has yet to have mets to her lymph nodes and has underwent a Craniotomy for a 3 cn in brain and two recurrences to her lungs. I don't know the size of the original tumor but she is very high HER2Neu
Hello, my sister was 32 and had no nodes, Stage I and nothing on any of her scans. Two years later she had mets to her liver, lungs and lymph nodes. She is doing great now, but wishes she had been started on Herceptin from the onset! It's good to be diligent. Love Jennifer
Diagnosed 2/2002 Stage 1 IDC, 0/16 nodes positive, mets to supraclavicular Lymph nodes 9/2003...now on Herceptin. Clean nodes are not a clean bill of health for many of us!!!!!!!!!!!!!
Cyndi was dx 5-99 IDC small tumor, Lumpectomy only, zero node involvement. Four A/C, 30 rads, everything clear for four years then 7-03 mets to both lungs. Still working on that with taxanes, cannot tolerate taxanes and herceptin together.
mom was orignianlly dx in aug of '99. had full masectomy - no nodes - didnt need radiaiton or chemo at that time. took tamoxfin until summer of 03. began havng horrble headaches, nausea. dx w brain mets in sept of 03. had wbr. started chemo in oct for spot n groin. in dec changed chemo drug cuz a few spots shwed up n liver. latest scans show everyhtng smaller - xpect n liver which is about the same. will do a new MRI of the head in a few days -- dependng on the results - maybe gamma or?